Membership gift
An effective way to help friends and family understand chronic
fatigue and immune
dysfunction syndrome (CFIDS) is to give them a membership to The CFIDS Association of America. It is a
small price to pay for not having to repeatedly explain my illness. It is also possible that my gift will
help them to better understand the need for research and to respond with a monetary contribution to our
association.
Anonymous
Text-to-voice program
ReadPlease2000 is a free software program that helps me
when I want to
read but do not have the brain power to do it myself. It reads any English text and is available at
http://www.readplease.com.
Rick Holland, Omaha, Neb.
Menopause relief
The menopause symptoms listed in Dr. Susan Love’s Hormone
Book (1998)
are similar to the CFIDS symptoms I experience. Other people with CFIDS (PWCs) may not realize that some
of their symptoms may be a result of menopause. If you suspect this may be true of you, her book contains
tips for safe symptom relief from hot flashes, night sweats, and other menopausal symptoms.
I. Cooper,
Ft. Myers, Fla.
OI tip
I have avoided many relapses thanks to a featherlight aluminum camping
chair I keep
in the trunk of my car. I carry it folded on my shoulder and sit anytime I need to. It is very effective
in managing orthostatic intolerance (OI) symptoms.
Catherine Bismuth,
Montreal, Quebec
Shower aid
If you are lucky enough to have your shower inside a bathtub, you
can get or make
a board to fit exactly over the edges of the tub and then sit on it. This allowed me to take a decent
shower instead of a bath for the first time in a year!
Bek Oberin, Melbourne,
Australia
[Editor’s note: for more tips, see Bek’s site at ww.tertius.net.au/foothold/tips.html]
Help for weary helpers
A chronically ill family member can be a heavy burden.
But
familycareamerica.com (link no longer active) can
help ease the stress.
The Web site offers personalized advice based on an individual’s personal
circumstances.
The group also provides tips on basic caregiving, planning for the future, and dealing
with depression.
The site’s library has fact sheets about reverse mortgages and other ways to finance a family member’s
care.
Carol Greentree, La Jolla, Calif.
Healthy friendships
Healthy friendships consist of mutual respect and admiration,
openness,
honesty, trust, integrity, and cooperation. So if you have made plans with a friend and then you find
you are too tired, don’t feel obligated. Friends should understand if you have to cancel plans because
of illness. Socialize only when you feel up to it.
From: 500 Tips for Coping with Chronic Illness
By Pamela D. Jacobs, M.A., San Francisco, Calif.
Resting Isn't Easy
Sefra Kobrin Pitzele, in her book We Are Not Alone: Learning to
Live with a Chronic Illness, asserts that resting is more than just sitting or lying down. She says
that resting to restore energy requires more attention. "You must remove all physical and mental stress
and pressure," because, although your body desperately needs and wants to rest, your thoughts often continue
to race ahead unless you train yourself to "let go."
To turn off the mind, Pitzele advises first preparing a comfortable resting area and
darkening the
room. Provide support beneath all parts of your body, then find something in the room to focus on until
the target begins to change shape. Allow your eyes to close when the object becomes fuzzy. Keep your body
very still and take very slow breaths, concentrating on allowing each part of your body to relax, one
member at a time. You’ll soon find yourself in the "twilight zone," or drifting from relaxing rest into
sleep.
